The need for a specific Pediatric Case Definition for children and adolescents

Despite the diagnostic improvement provided by the 2003 adult Canadian definition, the lack of a specific ME/CFS diagnostic criteria for children and adolescents continued to create very serious problems. Except for a few clinicians, including Dr. David Bell in Lyndonville, New York, ME/CFS researchers and clinicians knew even less about many of the specific aspects of pediatric ME/CFS than they knew about the adult illness.

The lack of any diagnostic criteria defining and substantiating the illness in children certainly did nothing to support the recognition of the existence of pediatric ME/CFS. The defining and naming of an illness gives validation to its existence—moreover such validation provides an incentive to medical research, and research provides further validation.

Dr. Leonard Jason (a pioneer in pediatric ME/CFS) and Nicole Porter in the CFIDS Chronicle, Summer 2007 summed up the problems stemming from the lack of a specific pediatric case definition:

"Due to the lack of understanding and the long absence of a clear, pediatric-specific case definition for the illness, under-diagnosis or medical misunderstanding can lead to long-term developmental impediments not directly related to the physiological disorder."

"For example, without a clearly defined medical explanation for frequent absences and academic challenges, the skepticism, marginalization and punitive measures taken by many school districts and local judicial systems have caused additional problems for many families already dealing with the immediate difficulties associated with this illness."

"Disturbingly, these diagnostic problems sometimes lead to juvenile truancy charges and even allegations of parental abuse and neglect. This makes the misdiagnosis and under-diagnosing of pediatric ME/CFS a critical issue—forcing a family to negotiate the continuous compromises to the child's physical health, while also struggling against a system that doesn't understand and validate the illness and special issues the child faces."

In addition to these many difficulties, "The lack of application of a consistent pediatric definition of ME/CFS and the lack of a reliable instrument to assess it...might lead to studies which inaccurately label children with a wide variety of symptoms as having ME/CFS as well as possibly missing children who have it." (Jason et al, "A Pediatric Case Definition for ME/CFS", JCFS 13 No. 2/3 (2006).)

Misdiagnosis of children with ME/CFS as being "merely" depressed, as having a school phobia, psychosis, "attention needs", etc. is made even more probable without a validating diagnosis.